Guest post from Someone who knows!
I'm pleased to announce that on Wednesday, November 12th, Despite Lupus will be hosting Rosalind Joffe, co-author of the book "Women, Work and Autoimmune Disease: Keep Working, Girlfriend!" Joffe will do a guest post on the issue of whether or not to disclose your illness in the workplace, even if your symptoms aren't impacting your ability to get the job done.
In Keep Working, Girlfriend!, authors Joffe and Joan Friedlander identify the factors that make working particularly difficult for women with autoimmune disease, and then offer practical suggestions to address them. Exploring such issues as the complexities of autoimmune diseases and the correlation between disease, diagnosis, and career development, they detail exactly what it takes to be successful in a job, including developing strategies and tactics, evaluating communication skills, building a support team, and considerations for self-employment.
While the book takes a different approach to managing life with a chronic illness than I do, it does offer valuable insight and information on contending with a chronic illness should you feel compelled to stay in the workforce. While I found it paramount to my recovery to take a break from my demanding, fast paced career, I acknowledge that there are others who, for various reasons, need to continue working. While I could go on about the benefits of stepping away from the rat race, and the fulfillment that comes from untangling who you are from what you do, as Joffe says in her website bio, "I've spent the past 10 years creating work that would allow me to earn a living and that I could do regardless of my health". I certainly can't argue with that!
Here's a review of the book from Allison Shadday, author of MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis:
For the chronically ill, the decision to continue working or not, can be an agonizing one. Optimistic, but realistic, Women, Work, and Autoimmune Disease helps the reader carefully weigh the pros and cons of working so that they can make an informed and rational choice. Specific steps are offered to help you make accommodations that may allow you to stay in the workforce longer than you thought possible."
Wondering what Joffe's background is? Here's a snippet from the About Me page on her website:
I was diagnosed with an autoimmune disease when I was 28 years old, one month after marrying the most wonderful man I could ever have hoped for. Multiple sclerosis sounded scary and so were my symptoms (blindness in one eye and fatigue so extreme I could barely lift myself in bed). But I was lucky — it was a relatively mild case that progressed slowly over the years. From the start, I made career changes and limited my options to adjust to my health needs. Looking back, it’s easy to see why it was difficult to achieve the stability and career track I so desperately wanted. I struggled to stay employed, difficult as it often was, and even if I didn’t know why it mattered to me so much.
By the time I was 42, however, I was severely ill with debilitating ulcerative colitis that made it too difficult to hold a job. I had two beautiful daughters, a wonderful husband and a full life (even if I had lousy health) but I was miserable. And it wasn’t just because I was so sick. I knew that I’d feel less lost and depressed if I could work, my lifeline to being normal and to maintain some sense of independence. A series of surgeries to rid me of my diseased large colon and ulcerative colitis and new therapies for MS that halted the progression of the disease, have left me relatively healthy. I like to say that I got a Masters in education 35 years ago and I’ve earned my Doctorate in living and working with chronic illness.
Today, Joffe is a Chronic Illness Coach, helping others to juggle a chronic illness while navigating the pursuit of a career. Be sure to stop back by on the 12th to read what she has to say!
Now, granted, I had an extremely wonderful year after having a stroke, after I got my pain under control, of course. I spent the year writing songs, hanging out with friends and being creative. I felt very alive.
So I don't think you need a job to be interesting or to have a full life.
But eventually, I had to work- I was not married and even with medicaid, I still had expenses.
And now that I am married, my hubby offers to pay for everything(!) which is awesome, but I still feel the need to work. Fortunately, I can do what I do part-time, so it's not all-or-nothing. If I had to go work full-time in a high-stress job, I'd be in the hospital in 2 months.
SO, it's an individual decision, and one that can change over time.
I, too, have had a wonderful experience not working, but I admit that I took up writing a book instead - giving me something to really sink my teeth into. That's why the book is so valuable - because it reiterates the fact that "working" doesn't have to be an all or nothing thing. Thankfully, there are work-from-home and part-time options out there.